Advocacy

Replacement of aids and equipment like calipers, walking frames and power chairs happens all too often. Then there is the need to modify our homes to accommodate increasing physical problems. The maze of documents put out by NDIS, My Aged Care and all the government departments which appear to be involved in our lives, is difficult to get through. We need to know who can assist us financially with what we need as these aids and equipment are quite expensive.

Two meetings between PSV, represented by Manager Allied Health and Community Programs, Kathryn Bailey and Coordinator Claire Formby, and polio community representatives from Bayside Support Group, PPV and PNV – Liz Telford, Margaret Cooper, Ron Exiner, Peter Willcocks, Bev Watson and Mary-Ann Leithoff from Polio Australia have taken place. This is the key consultation for PSV.

Polio requires the person to spend considerable time and effort to obtain the information they require enabling them to adapt to the challenges of living with the condition of post polio. However, this knowledge and expertise is rarely used for the planning and provision of polio healthcare.

Since PPV was established five years ago, in response to people’s concerns about reduced services and lack of information, many stories have been shared about hospital and other medical experiences. These have included misdiagnoses, anesthesia issues, respiratory difficulties after surgery, inappropriate after surgery care, spinal injury following surgery and even unexpected deaths.

Patients who have had polio in the past can present as a challenge to clinical assessment. The majority of these patients are older than 60 years of age and may report a range of symptoms that relate to impairment progression in the form of post­polio syndrome but could also be secondary health conditions, age­related concerns or an unrelated health matter. Factors involved in the management of patients who have had polio include careful diagnosis, recognition of adaptive strategies and enhancement of the patient’s self­care skills.

The proposed project involves taking the early work done by St Vincent’s Hospital Melbourne, developing it further, disseminating it throughout the Victorian health system before its introduction into the Australian health system. The project involves working with the relevant professional associations and education authorities to help ensure that health providers are aware of and trained in dealing with the approximately 150,000 people with polio, post polio syndrome or late effects of polio in Australia.

Liz Telford and Fleur Rubens letter to The Age was published on August 18, 2015

Julia Medew highlights errors in clinical management that have occurred in our hospitals with some devastating outcomes (“Hundreds of patients’ deaths preventable”, 15/8). A lack of medical knowledge is another cause. Here is a real example. In 2011, a man died unexpectedly in a major hospital a month after surgery. He had a history of polio. A surgical error considered minor (as it is for someone without post polio) combined with inappropriate post-surgery care (due to hospital ignorance of post-polio management) resulted in respiratory failure. The cause of death was given as “post polio”, although it was not the disease process but clinical management that caused this man’s preventable death.

Anyone who contracted polio, whether paralysed or not (an estimated 400,000 Australians) may develop post polio, a condition that may affect the central nervous and respiratory systems. One Victorian hospital now has a polio medical alert for patients known to have had polio. All hospitals need to do the same, and patients should alert staff if they ever contracted polio. Despite the successful global polio eradication campaign, post polio will be around for decades to come and hospital staff must be educated.